Little Havens is joining in the Children’s Hospice Week celebrations to mark the vital work of children’s hospices across the UK.
Children’s Hospice Week, taking place 19th-25th June, celebrates the specialist care and support charities like Little Havens, based in Thundersley, provide to babies, children and young people living with complex or incurable conditions.
The charity offers care and support for the whole family, from Essex and the surrounding boroughs in their homes and at their hospice.
One of the many children Little Havens supports is Oscar, who has a cheeky personality, a huge smile and a love for everything Harry Potter.
Oscar, 12 from Braintree, was born with quadriplegia cerebral palsy, a four-limb movement disorder. More recently, in 2021, Oscar’s gut started to fail. He also had a burnout from dystonia, another movement disorder Oscar lives with, which affected his brainstem and cannot recover from this.
Mum, Adelaide, said, “When we were first referred, I was horrified. I had this image of a hospice being very sad and was full of dread. I had Oscar and his little brother Jack with me, and within minutes, we soon realised it’s a really happy place and not sad at all.”
Little Havens see Oscar for who he is, not his medical diagnosis, which is very important for his family.
Adelaide continued, “Little Havens have taken the time to get to know Oscar, he’s not just someone who can’t talk. At the hospice, Oscar is just ‘Oscar’. It’s important to the Care Team that work with him that he’s known for liking Harry Potter and music. It’s not about his medical condition and his medicines.
“They care for Oscar how I would as his mum. The amount of love and support that’s shown to him can’t be taught, it’s really special and comes naturally to anyone who works at Little Havens.”
After being referred to the hospice, the family began receiving care in their home from the Little Havens Community Team. This regular respite allows Adelaide and dad Rob to be parents, not carers and gives them time to rest.
“Little Havens Community Team have given us opportunities to go out when we wouldn’t feel comfortable leaving Oscar with anyone else. When they come into our home, we don’t feel on edge, they accept us for who we are – a mad house – but they aren’t bothered by this.
“It’s much more to us than respite, they help to get the best out of each day for Oscar. If he’s having a good day and really smiley and happy, they go outside because they know that’s something he loves and is important to him. They want to make Oscar happy, and that’s what Little Havens does for us as a family; nothing is impossible.
There’s no recovery for a brainstem injury, and one day this will affect Oscar’s ability to breathe. So, the family “…run with the good moments” as it’s their chance to make precious memories together. Like the memories they have made at the Little Havens Christmas party, sensory time sessions, trips to the beach and visits from a special therapy dog and a pony!
“If we say we want to go to the beach for the day, everybody will rally and make that happen. If we say we want to have a day with the boys making memories at the farm, they will make that happen for us. The memories Little Havens have given us are much more than an overnight stay, they are like an extension of our family.”
It costs more than £83,000 every week for the charity to be there for nearly 300 families in Essex who need this type of specialist care. This can only happen because of the generosity of people across the county making kind donations, organising fundraising events, visiting the charity’s 25 shops or leaving gifts in their Wills.
Everyone deserves to live their lives to the full, no matter how short. The support from the Essex community is helping Oscar’s family to do just that.
To make a donation to support the free care of Little Havens this Children’s Hospice Week, supporting children like Oscar who only have a short, but precious life, visit www.havenshospices.org.uk/oscar